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I just got the word that the insurance company will pay for my IVIG treatments. The doctor said this hopefully will turn around the Dermatomyositis and all the skin ulcerations and rashes I have now. I will continue to stay on minicylline also.
Julie
Thanks! I am so excited but also very scared! I seem to react to about everything! Your story was an inspiration to me! I hope I am as lucky!
Julie
Thanks Sharon! I went to the Rheume on Wednesday and he could not believe all the skin ulcerations I had. He called the medical director for the insurance company the next day and we got it approved today. I guess I have to have 4 treatments right together x 2 months.
How are you feeling? Have you noticed a change since your IV infusions in Ida Grove?
Julie
Julie,
My husband had horrible skin ulcerations. At one point, we thought he might actually lose part of his fingers they were so bad. Now, it's all just a bad memory.
Do you wear gloves to protect your hands and to keep them warm? My husband had a collection of glove liners that he wore round the clock. They can make a big difference. Also, you can try Manuka honey on the ulcerations.
[user=2307]BJK7493@aol.com[/user] wrote:
How are you feeling? Have you noticed a change since your IV infusions in Ida Grove?
Julie
Hey Julie,
So sorry you are going through all this!
I am doing okay. No big improvements yet and still a lot of down days, but have a few good days now and then. I'm still trying to be patient! 😉
You are in my thoughts!
Sharon
I also have terrible skin ulcerations. I have 2 on my nuckles and at one point my whole finger turned blue and we thought we would lose that finger. I also now have them on my chest, chin and shoulder area. I wear gloves anytime my hands are exposed to anything. I even wear gloves to shampoo my hair! I cannot find that Manuka honey in Des Moines. Where should I look on line to order it? I just ordered some organic coconut oil. Were your husbands knees and ankles blue also? If I could get over these skin ulcerations I think I could deal with the joint pain! Thank You so much for answering all my questions. I know I must seem like a broken record. My other concern is I have gotten so short of breath these last 2 weeks. I don't know if it is because of all the weight gain with the steroids or what but it sure is scary.
Julie
Julie,
Watch your lungs. You are susceptible to pneumonia especially on the prednisone. My husband spent three months on oxygen due to pneumonia from the prednisone.
Your best bet for the Manuka honey is to order online. Make sure that it has active factor. I don't remember my husband having blue ankles or knees but he had many strange symptoms. He did have very dark skin around his elbow and his face was very dark.
All of this can be turned around athough I'm sorry to say that it will take a while.
May I ask how old your husband is? I am 47 yrs old. What kind of gloves does he wear? Does he wear them all the time? I live in Iowa so we have very brutal winters here. I can't be outside for more then a few minutes and it feels like I have frostbite. What part of the US do you live in. How many tx has your husband had of the IVIG?
Julie
Julie,
My husband is 50 and was 45 when he first got sick. He had no health issues prior to being sick and was very active. We live in sunny San Diego so wearing gloves isn't quite the fashion norm here. He wore glove liners nonstop for several years. When it was cold outside he would wear the glove liners and then leather gloves on top. The last year or so of glove wearing his physical therapist recommended these isotoner therapeutic gloves and he wore them quite a bit.
http://www.isotonertherapy.com/product_info/index.php
As far as IVIg, he has now been on it for two and half years. He has started a very slow weaning process and now instead of getting it every month, he gets it every six weeks. He'll probably have either the amount he receives or the frequency reduced again in a couple of months. IVIg is the only treatment he receives right now. He feels so good right now that he'd like to be completely done with it but I'm the voice of reason that makes him reduce it slowly.
Good luck on Tuesday! Are you getting two days a month? Four days? I wasn't clear on your post above.
Thank You for the info on the gloves. I will be getting 4 infusions in a row monthly x 2 months. Then my doctor said we would see how I was doing. My insurance company only approved it from Sept 3 to Dec 31 2010 then I guess we have to beg for it again. These ulcerations are so painful at times. They just appear out of nowhere! Right now the worst is on my ring finger nuckle! I am a nurse so I have to have all ulcerations covered when I work. I am praying the infusions go well. I am so nervous!
Julie
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